40 vs. 20? Doesn't add up......

[jnstaylor98]

I'm on 20mg. Every month when I call to refill they ask, "have you missed any injections." Every time I speak with SS they ask, "have you missed any injections?" It seems to be a pretty big deal to them that I NOT miss any injections.

40 mg X 3 days a week is 120 MG a week.
20 mg X 7 days a week is 140 MG a week.

The 40 is ONLY 3 a week, Not every other day all the time as some wrongly assume. So, by taking 3 40's you are getting one less injections worth of a dose each week.

52 missed injections worth of meds less a year.

For them to get so fired up about whether or not I miss even ONE, how could it be as effective to purposefully take 52 fewer worth of MG of Copaxone a year?

Someone smarter than I please explain the science on this.

[Jules A]

If you check out some of the threads on the new 40mg injection you will see this topic addressed.

Many focus simply on the reduction in shots. Which I think anyone would like however I'm more concerned with the overall dose and don't want to chance administering a reduction in medication.

FWIW my MS specialist didn't seem to think it was a big deal but I figured I'd wait and see especially because I also worried the site reactions would be increased with the new preparation and in some cases it would appear this has happened.

Mostly I'm superstitious and know that my MS could take a miserable turn at any time and don't want to be second guessing that if I had only continued with my present dose I would have been better off.

[MarkLavelle]

The SS is all about keeping you on Copaxone, whatever it takes. So they want to be really sure you're in the habit of being compliant. Missing a single shot means nothing to your health, but it might be the first step toward being a quitter <gasp!>...

[Cat Mom]

I'm soooo not smarter than you... never actually thought of doing the math! You're right! What gives?

This is so timely, I was going to ask my neuro about it at my 6 month checkup tomorrow!
Jen

[Mable]

Before the 40 became available, I did this math and decided I could just skip one day a week. I did this for months and when Shared Solutions called, I told them I was taking Saturdays off.

Their response is, "better tell your neuro!"

When I did see my neuro next, I told him I was skipping one shot a week, and I explained my logic. He laughed and said, "Okay."

When 40 finally came out, I took it for a week and ended up allergic to it. He felt strongly that I should go back to the 20. That made no sense to me, since I was probably going to develop an allergy. But he thought I would be fine, and he says my MS is under control with Copaxone--which seems to be true.

So, I asked if I could take my next couple shots in his office.

His nurse stood by with a Benedryl injection for my next two shots... and I was fine. So now I'm back on 20, and I still take Saturdays off.

I also don't shoot in all 5 areas. All my fat is in my stomach and back side. Everyone is fine with that too. "Well, you know your body best," said the Shared Solutions nurse.

Basically, Shared Solutions can't suggest or endorse anything the FDA didn't approve of. But once you say it's okay by your neurologist, they don't give you a hard time about it.

[Jules A]

Shared Solutions doesn't ever call me and the company where I get my medications only ever asks me if I have any changes to my medical condition or questions for the pharmacist.

In any event I would agree it is between you and your neuro and it makes sense that Shared Solutions for financial and legal reasons would only recommend the FDA indication.

[kathryn]

Thank you so much for this post

Before the 40 became available, I did this math and decided I could just skip one day a week. I did this for months and when Shared Solutions called, I told them I was taking Saturdays off.

Their response is, "better tell your neuro!"

When I did see my neuro next, I told him I was skipping one shot a week, and I explained my logic. He laughed and said, "Okay."

When 40 finally came out, I took it for a week and ended up allergic to it. He felt strongly that I should go back to the 20. That made no sense to me, since I was probably going to develop an allergy. But he thought I would be fine, and he says my MS is under control with Copaxone--which seems to be true.

So, I asked if I could take my next couple shots in his office.

His nurse stood by with a Benedryl injection for my next two shots... and I was fine. So now I'm back on 20, and I still take Saturdays off.

I also don't shoot in all 5 areas. All my fat is in my stomach and back side. Everyone is fine with that too. "Well, you know your body best," said the Shared Solutions nurse.

Basically, Shared Solutions can't suggest or endorse anything the FDA didn't approve of. But once you say it's okay by your neurologist, they don't give you a hard time about it.

14 years on 20 and did fine. 6 weeks on 40 and miserable. Back to 20 ASAP .40 made me feel dazed and out of it. Lost appetite and depressed. Sorry you had a bad experience but thank you so I don't feel like I was going nuts!

[Cat Mom]

I did ask my neuro this dose ? on Mon, it's not available in Canada but he suggested the 40s have a longer half life than the 20s, meaning the amount of time it stays in your body after injecting. That is the reason 120mg vs 140mg per week is acceptable.
Jen

[Mable]

But that makes no sense Cat Mom, because it takes Copaxone up to 9 months to reach maximum effectiveness. It's not going to drain out of our bodies in a day.

This is why my neuro doesn't argue with me anymore, I think.

[MrsBones]

I think the reason SS has a stick up their YKW about taking the 20mg every day is that is what the initial studies were based on and that dose/schedule was approved by the FDA. The same reason they have a fit if your injections don't exactly comply with their guidelines. They have to go buy the trial results because that is what was FDA approved.

Unfortunately, FDA approval shows using a med is safe and effective only in the way/s it was used in its trials. There may be other safe and effective uses for that approved drug, as with the varied doses of Copaxone.

There were studies when the only dose option was the 20mg that used 20mg every other day, so three or four times a week. The was some success in those small trials. Neuros have suggested fewer than 7 injections a week, even before those studies. Same as with many meds, drs prescribe drugs in a way that is not quite the way it was meant or approved to be used.

As far as the 40mg goes, Teva came up with a formula that had pretty much the same efficacy with fewer injections (I imagine as a result of the 20mg fewer injection trials), thereby eliminating one of the Copaxone downsides, injecting daily. The timing of the 20mg patent expiring, probably had nothing to do with it. LOL

I switched a couple weeks after the approval. I actually had the neuro do the paperwork the day after it was approved, but my insurance and specialty pharmacy had mis-communication issues. I haven't had any real difference between the two doses, so I've been thrilled with it.

[Mamabug]

For 5 years, with my MS specialist's permission, I took 20 mg 4x per week. There were studies out there that indicated that 20 mg, every other day, was just as effective as daily.

I did much better on this than on Betaseron.

I suspect that missing 20 mg per week will be fine. I missed 60 mg per week.

~ Faith

[kathryn]

Copaxone

Thanks for the reply . Taking the 40 3x a week made me feel so wretched. Will start back on the 20 every other day . Amazing how I let myself be talked into the Tecfidera and then the 40 when for 14 years have done reasonably well on the 20 every other day. Am 64 now and have never had an exacerbation in all that time. Old stuff just gets weaker - left hand and foot drop. Also could live without the fatigue and lightheadedness which seem to drop in to visit a bit too often!

[Imagine]

Me Too!

I did ask my neuro this dose ? on Mon, it's not available in Canada but he suggested the 40s have a longer half life than the 20s, meaning the amount of time it stays in your body after injecting. That is the reason 120mg vs 140mg per week is acceptable.
Jen

I was told the same thing by ms specialist and via my own research. Initially, doing the math, I thought 1 20mg in addition to the 3 40mg would be the best course of action- told NOT to do that, as it could be too much due to the half life of the 40.

Shalom, Suzanne

[Devilinside]

OMG! I should have read this first before I started a new thread. I was on the 20mg for 3 years, just fine. Started the 40 mg 6 weeks ago and feel HORRIBLE. Am quitting for the next 3 weeks and will start back on the 20 mg when I see the doc on 9-25-14. Anyways, for those of you that said it made you feel bad, THANK YOU! I thought I was just losing my mind and it could not be the 40 mg. Boy was I wrong!

[kathryn]

Copaxone 4o mess

I stopped August 21 and went on nortriptylne for depression and anxiety 10 days ago, What a weird journey. Yesterday I felt so "empty" and lay in bed most of the day. Today I feel very agitated and ended up having to take ativan BUT last night was the first night in over 4 weeks that I didn't wake up "frozen "with anxiety at 2 in the morning. I have TOTAL empathy for anyone who has ever experienced this and not something I ever want to have again.
Read this and said wow allot of that is me:

Persistent sad, anxious or "empty" mood
Feelings of hopelessness, pessimism
Feelings of guilt, worthlessness, helplessness
Loss of interest or pleasure in hobbies and activities, including sex
Decreased energy, fatigue, feeling "slowed down"
Difficulty concentrating, remembering, making decisions
Insomnia, early-morning awakening, or oversleeping
Low appetite and weight loss or overeating and weight gain
Thoughts of death or suicide, suicide attempts
Restlessness, irritability
Persistent physical symptoms that do not respond to treatment, such as headaches, digestive disorders and pain for which no other cause can be diagnosed

Fortunatley not suicidal but the loss of appetite was a bigee. I LIVE to eat cookies and candy and lost 7 pounds in 2 weeks. Can't believe a change of a drug strength can do you in in 6 weeks. I too thought I was loosing my mind. I thank you for helping me define the problem. Wonder if the extra changed our brain chemistry? Hope it all gets straightend out. 10 days in I am beginning to feel better and did do the 20 mg last night. Keep me posted please.